Cyberknife for her2 brain mets

Judi · 09-14-2008, 09:43 PM

I was diagnosed July,2006 with stage 4 her2 + breast cancer. Massive liver envolvement. Liver couldn't detox the normal dose of taxotere so it circulated through my system for about 7 days. Neutropenic fever, discussion of "no code", family in California, and a doctor who would work with me prompted a quick move to California. Stabilized, finished the taxotere, and continued on Herceptin. Brain mets (3)found two weeks ago. Cyberknife recommended. Lots of research, will be treated Tuesday.

AND, I really need to talk with/hear from someone who has experienced this treatment 3 to 9 months ago for brain mets. Thanks for your time. Judi

hutchibk · 09-14-2008, 10:04 PM

Hi Judi -

I have 3 brain mets that were discovered 18 months ago, but have been held in check with Tykerb/Xeloda until my MRI last week revealed that they are active again. I will know tomorrow after my radiation consult exactly what my schedule will be, but I will be getting LINAC STRT (linear accelerator, stereotactic radiotherapy) as well. It is the same thing as Cyberknife, just that Cyberknife is a brand name of the machine that does the treatment. The one my doc uses is a Varian 2100 IX. I think we are talking about 5 fractions (5 zaps) of each tumor. My tumors range in size from 5mm-10mm. They are located in the rt and lft cerebellum and the right parietal. I have done a lot of research and I trust my doc that this is a great treatment for my dx.

Many on here have used Gamma to treat their brain mets. I am certain that some of them will provide you with their experience and expertise. Keep checking back!

Here's a website that might be helpful... that describes the different types of beams used to treat brain mets.

http://www.irsa.org/radiosurgery.html

chrisy · 09-15-2008, 09:51 AM

Judi,
Esther on this site (she also posts on bcmets.org as Luv2ski) has had cyberknife for brain mets although it was a while ago (a good sign). She posts infrequently here so the best way to contact her might be via email or on the bcmets.org listserve. You can find her email by clicking on the toolbar on top "members List" and finding her screen name Esther. Her email has luv2ski in it.

Also, several others here have been successfully treated with cyber or gamma knife, I'm sure someone here will see your post. Both are effective treatments.

You aren't the Judi who moved to california and recently became a grandma are you? (if so, maybe we've met!)

Judi · 09-15-2008, 12:05 PM

Yes, I am that Judi.

Emmay · 09-15-2008, 12:45 PM

Hi Judi,

My sister received CyberKnife treatments a number of times, whenever new small mets appeared, and we found the treatment very effective. It is a painless, straightforward therapy used when mets are small and few in number, and is much much better and easier than actual surgery and/or whole brain radiation. The mets that were treated with CyberKnife have not recurred. I wish you the very best results!

Emmay

hutchibk · 09-15-2008, 10:49 PM

I am thrilled to hear the Cyberknife successes!! As we call it around here "the whack-a-mole" method! I start mine on Weds. Can't wait to hear those suckers (pesky little tumors) SCREAM! LOL

Faith in Him · 09-17-2008, 08:50 AM

Just wondering what is the difference between gamma and cyberknife?

Judi/Brenda: wishing both of you sucess with these treatments.

hutchibk · 09-17-2008, 09:22 AM

Faith - click on the link I posted above- it described the different treatments and their differences. The biggest diff is that with Gamma you have to have the halo bolted into your head for the treatment.

pattyz · 09-17-2008, 10:18 AM

Judi,

Don't know if I qualify, as you ask for info from those who: "experienced this treatment 3 to 9 months ago".

I had CyberKnife to treat a remaining 6 brain mets; two sessions, two days apart. But this was May 2004. Something like 53 months ago.

Here is what I wrote to another who asked about my experience:

"I was on the table for 90 minutes each session...... I had a lot of pain on the back side of my head from the amount of time head was in that position. They clamp the mask down TIGHT. I found that purposely pursing my lips, tongue over teeth the second day while getting clamped to table gave me just enough room so I wasn't sore in mouth afterwards. Also had some Ativan that round. Much better, tho' head was sore again.

This was the only time I lost all hair to area radiated, and I believe it was from the area treated: low back of head. All hair grew back in a normal time frame.

All my focalized rads were 100% successful. I had a minimal amount of head pressure, some dizziness that low dose decadron for 7-10 days handled."

This was at a new CK center. I don't believe I've heard of anyone else since then who exp. exactly what I did... I think it has to do with a more knowledgable / older CK group.

You should be just fine, really.

best wishes,
pattyz

Judi · 09-17-2008, 01:05 PM

Hi!
This is a good site that goes over the difference between Gamma Knife and Cyberknife. The quick and dirty is: Gamma uses gamma radiation, and a head frame screwed into the skull (not as bad as it sounds, I had it for a vestibular schwamoma). Used for head only. Cyberknife may be used on whole body, and uses regular x-ray. Molded face mask attached to stretcher immobolizes head during treatment. Doesn't immobolize quite like the gamma knife frame, but it works. This web site provides technical information, and an expanded version of what I just said: http://www.irsa.org/radiosurgery.html
Judi

Darlene Denise · 09-17-2008, 04:34 PM

Judi: I was dx with 8 <5mm brain lesions on 08/22/08. Rad oncs only wanted to do WBR due to the number and I said no way, not now. I went to a University Hospital in another state that has Cyberknife and they did not want to offer the treatment since I had over 6 lesions. Via their Tumor Board and reconsideration by the Medical Director of the Cyberknife, they agreed to the treatment in two sessions.

Had treatment yesterday for 4 lesions and today for the remaining 4. Treatment ended at noon, we drove 4 hours home and here I am writing about my experience already!

I refused the Decadron (mean, nasty stuff) I'll deal with what comes without it. I took the Ativan and feel it was necessary since my sessions were long, hour and 45 minutes yesterday and an hour and 15 minutes today. Hard to lay still bolted down by that mask without feeling anxious.

I went shopping and out to dinner yesterday right after treatment. I had a mild sensation in my forehead, eye area that felt full and a little pressure at beadtime. Not bad, no need to take anything. Woke up with no symptoms. Same today, feeling the head thing right now, but not bad.

I will be meeting with my onc Monday to discuss adding Tykerb/Xeloda to my Herceptin to hopefully, keep any micros from growing and give better overall control.

MRI every three months and if any more show up I plan to shoot them dead with the Cyberknife again. I pray no more, but no crystal ball with this damn disease.

For me WBR is not an option until it HAS to be, which I am planning on NEVER!!

BTW, I'm 48 years old her2+++ orig dx 12/07 with inumerable liver mets at dx. Almost NED from the neck down, two tiny lesions left that are too small to measure. Herceptin rocks!!

Hope this helps! I hate this crap as much as you do!! Let's hold tight to hope and good medical practices to pull us through and get on with living. Scary times, but we have to take charge and move forward!! I'm moving, as fast as I can!! Charge!!!!!!!!!!!!!!!!!!!!!!!!

LOL Darlene in Virginia Beach

pattyz · 09-18-2008, 07:06 AM

Darlene!

This was such a helpful post to ANYONE who fears brain mets, or the newly dx'd with brain mets.

As I said (I think!) in my post, it was the back of my head that really ached from being on it so tightly for so long during the CK's. Didn't yours hurt?? Or are they putting something softer behind the head now???

So pleased for you to have had such a great response to tx neck down!

I also refused WBR. Steadfastly right or wrong... and I have no regrets. I'm six yrs out from first brain mets dx and have no worries about the possible 'long term' S/E of the WBR.

Xeloda/Temodar has worked well for my current 6-8 brain mets since Aug. '05. I'm just knocking wood more often when I say that.......

Hoping you can keep that good energy that comes across in your post for a very long time!

pattyz

Darlene Denise · 09-20-2008, 07:54 AM

Pattyz:

They made the "head cradle" and it was hard. It wasn't uncomfortable during treatment and fortunately no pain from it.

I enjoyed your pictures on the bcmets picture trail! You have been so kind to offer your info when I reached out on bcmets about my new brain mets dx. Thank you from me and my family!!

I have a friend who was dx with mets to the liver in 1997 at age 37, tough treatments for first year and half, then herceptin became available and had her under complete control unitl 2002 when one brain met poped up. She had gamma and they convinced her to do WBR for any micros. She didn't tolerate WBR well and was out of work for 6 months. She has short term memory problems and her ability to concentrate has been steadly diminishing over the past 6 years. She has to take Aderall everyday. She wishes she hadn't gone with WBR, but we'll never know if WBR is why she has not had any reoccurance.

I know I am rolling the dice with Cyerknife since I have 8 mets and all the docs recommended WBR. Not sure what way I want to go with adding Tykerb and or Xeloda, Temador to my Herceptin. I have read several mixed reviews from this site and bcmets. I see my onc on Monday and hope I can find a plan I feel good about.

I think I recall that you were having some vertigo issues.
We were referring to it as crap on a cracker. How are things for you now? Hope the crap slid off your cracker!

Alot of my energy comes from gals like you!! I'm following and learning right behind you, girlfriend!!!!!!!

LOL...Darlene in Virginia Beach

pattyz · 09-21-2008, 08:13 AM

Darlene,

Ok, so I have lots of memory issues!! but you've jogged it with this latest reply

I had an ENT guy look at me, put me through an excercise for the positional vertigo. It helped to a good degree. So, yes, that crap fell off my cracker...

I see onc Thurs for latest on MRi results last week.

As with all challenges, we do one step at a time, one day at a time.

<<Alot of my energy comes from gals like you!! >>

Oh, so that's where my energy went!

Hope your tx plan is one you're fully behind, no looking back or regrets. No time for that, it's too precious to waste on
"what ifs?".

hugs to you,
patty

DianaT · 02-25-2009, 08:46 PM

Thanks for posting y'alls experiences! I go tomorrow morning for my cyber knife. I have one lesion (8mm) that they are diagnosing as a met but don't really know. I have had no symptoms at all so I prefer to keep my skull intact and zap it with the cyber knife.

I pray that this is the last I will have to deal with this ~ from the neck down I am NED, now I just want to be NED in the head!!

Joan M · 02-28-2009, 08:59 AM

Judi,

I've heard good results with Gamma Knife and Cyberknife, as you can see from this board.

But when my 2.6 cm left frontal lobe lesion was found I opted for surgery followed by five treatments of stereotatic radiotherapy (SRT), because the control rate was better due to the size of the lesion.

My tumor was just a little too large for one dose of stereotatic radiosurgery (SRS), according to the surgeon and radiation oncologist. Radiation alone would have produced a control rate of 75%, while the control rate for surgery alone was about 45%-50%. Control of the tumor recurrence was 95% when surgery and radiation were combined, in my case.

I had one follow-up MRI about a month after surgery which looked good, and I'm due for another scan in mid March.

Joan